Tuesday, January 27, 2015

Music For Mom

Music is an entryway to the soul.

Several people have sent me links about the effects of music with dementia patients. Music has been used as a form of therapy for Alzheimer's and dementia patients. I even read a story about one man, who had Alzheimer's and had not spoken in four years, who attempted to speak again after a month of music therapy. While much of how the brain and body processes music remains a mystery, this much we know: there is a strong connection between the brain's auditory cortex and it's limbic system, which is where all emotions are processed. Music has been known to relieve agitation, reduce stress, decrease problem behaviors and so on.

Mom used to love listening to her music; even in her stages of dementia. I've noticed that lately, however, mom's radio has been very quiet. While I was over at mom's a few weeks ago, I decided to see if I could rekindle mom's love for music. As she sat on her bed, waiting for the clock to change to 12:00, I dusted off the CD player by her bedside and put in her favorite CD- a Mormon Tabernacle Greatest Hits CD.

"Mom, do you remember this music?" I asked. Mom gaze did not break from the clock.

"Born Free!" I sang in my operatic voice, trying to spark some memory with mom. She shifted slightly on the edge of her bed but continued to stare at her clock, ignoring my serenade.

I changed the song to another familiar song.

"Oh what a beautiful morning! Oh what a beautiful day..." I sang, again in my exaggerated opera voice. Mom used to wake me up with her own operatic version of this song long ago, when I was a child. Oh how it annoyed me then, in those early hours of the morning! And oh, how I'd do anything to hear her sing it just once more!

I put my arms around mom and sang very theatrically, trying desperately for a response. Mom finally looked at me from the corner of her eye.

"It's 11:55 too, just a few more minutes and it's lunch time," she said, in her slurred speech.

"Mom, do you remember this song?" I said, redirecting the conversation.

After asking for a few more times, mom finally looked at her CD player suspiciously and said,

"I used to use that too and put on my good music too from that place far far away."

"Yes mom, you mean the Mormon Tabernacle Choir. This is them. This is your favorite CD. You used to listen to it all the time," I answered.

After a couple more times of repeating that explanation, mom finally responded,

"No this isn't right, I don't know this."

To be honest I wasn't really expecting that she would remember. But coming face to face with reality is always a little tough. After my silly serenades failed to spark any memory with mom, I just sat beside her and put my around her, choking back the tears. I told her that I loved her and that I missed her. Mom continued to stare at the clock and 11:58 she broke free from my embrace and stood in front of the clock. She waved her hand, mumbling,

"11:58, good, almost time to eat lunch when it changes to 11:59."

No sooner than the digital clock read 11:59, mom sprinted out of her bedroom and down the hallway, towards the kitchen to make her sandwich.

Dementia is such a confusing disease. Sometimes I feel as if we are stuck in limbo. Mom is still living, yet she's not really living. Each time I try to spark her memory or make a connection with her, I know my efforts are in vain, yet I can't help trying.

Monday, January 19, 2015

Still Alice

A few months ago, I saw some posts floating around on a few Facebook Dementia/Alzheimer's pages about a new movie coming out, called "Still Alice". The movie stars Julianne Moore, who plays a 50 year old woman diagnosed with Early Onset Alzheimer's Disease. People in the dementia community are encouraging others to support this movie and raise awareness about early onset dementia. It sounded like a movie I'd be interested in seeing and I learned that it was set to release on January 16th.

I anticipated the release of "Still Alice" and had plans to see it over this past weekend. When I scrolled through my phone to view the movie listings, however, "Still Alice" was nowhere to be found! Turns out, the movie is an independent film and is showing only in a select few theatres. I was pretty disappointed. I'd been hearing great reviews of the movie and Julianne Moore even won a Golden Globe for her performance (and she's up for an Academy Award!); I was looking forward to seeing it. Instead of sitting in a movie theatre Saturday night like I had planned, I ended up in Target with my hubby and kids. I had only recently learned that this movie was based on a book so while shopping, I made a detour through the book section, and look what I found!

Even though I was in the middle of reading another book, I began reading this book Saturday night. And I couldn't put it down. I just finished all 292 pages this morning, less than 48 hours after buying the book. Even though I may have more of a vested interest in a book about dementia, this book isn't written exclusively for people who are dealing with the illness. It was very well written and a great read for anybody. It does give a lot of insight about the illness and the hardships that come with it, but the author delivers it in a way that is compelling; you don't feel like you are being "taught" about dementia as you read. You feel as though you are given insight into Alice's life, from her perspective, as it is turned upside down with her diagnosis. The book was powerful with raw emotion. If you are a big reader, you will like this book.

Some of you may wonder how I can read the content of this book, given my situation with my mom. It's easy: I sat with a box of tissues next to me! In all seriousness, this book gave me insight into my mom's perception of the state she's in. There were so many similarities between and Alice and my mom, but one major difference is that Alice knew she had the disease; by the time my mom received her diagnosis, she didn't know what Dementia or Alzheimer's was. I often wonder what thoughts were going through my mom's mind (and still are going through her mind!) as she began noticing her memory problems. As I read about Alice, I felt so much compassion and empathy towards to my own mom. It was also somewhat reassuring to know that, even though she may not remember a lot of things or communicate what she is thinking, there's a part of her still there that appreciates all the kindness and love we have to offer. She is still a person, maybe not the same as we knew her. But it reminded me to never throw in the towel and assume that she's too far gone to know what she wants or how she feels. When I finished reading the book, I went back to my mom's room and beside her on the bed. A few tears rolled down my cheek as I put my arms around my mom and I told her I loved her. I received no response in return, but I have to believe that even though she can't communicate a response, something is stirred inside of her.

I highly recommend this book for anyone to read. It is engaging, intriguing, heartwarming, sad of course; but it also bring awareness to the disease and teaches (in a non-teachy way) how to recognize the signs of early onset dementia. It is far more common that people realize! Catching it early on can help a lot in the management and slowing-down of the disease process for many dementias, including Alzheimer's. If you are looking for something to pick up and read, pick it up or order it on Amazon! Keep your eye open for the movie. I believe it will be released Nationwide as the Oscars draw closer.

Monday, January 12, 2015

A Full Update

It's been a while since I've do a full update on mom. I used to post an update every 6 months, following her check-up with UCLA. Since we've discontinued our visits to UCLA, I haven't been regular about posting updates. So here it is; a full evaluation of where mom is as of the New Year, 2015.


Although mom's language showed some slight improvements a few months ago, it quickly slipped away. If you don't talk to mom on a regular basis, it is likely that you won't understand much of what she says. I'm usually able to make sense of what she is trying to say (mostly because she is very repetitive in every conversation...one clear word will tell me what topic we are discussing), however, there have been a few times where I have no idea what she is trying to say. She speaks rather quickly, but most of her speech is slurred and mumbled.


This is different from language. Mom used to talk about her childhood A LOT; memories, events from the past. She loved to talk about religion and her pioneer ancestors. As of now, there are only a few things she will talk about: how weird she looks, how nobody supports her to drive her places, how those stupid doctors shouldn't have cancelled her as a driver, how she needs more make-up, how she needs her medicine....that's about it. I never hear her talk of the past anymore. She really doesn't comprehend much of anything we say. IF she does, it is only after repeating ourselves several times and then she might pick up on one word that makes a connection. She talks but she doesn't listen. It's near impossible now to have any kind of conversation with her.


Unfortunately, this skill is rapidly declining. Mom will go several days without a shower and oftentimes my dad has to corner her while she is changing (either in the morning or the evening) and force her into the shower. Once she is in the shower, she is able to wash her hair and body with prompts from dad. Most days mom will hang her head in the sink in the morning to wash her hair and sometimes she will step in the shower to sponge bathe particular areas. But it has become a real struggle to keep mom fresh and clean.

She still brushes her teeth after every meal and washes her hands after she uses the bathroom.


Mom does still dress herself. However, most days she wears her shirts backwards and sometimes her clothes are inside out. She doesn't notice it at all.

She still attempts to do her hair and make-up. Lately, her eyebrows have been blue but she doesn't seem to notice it. She puts on LOTS of body splash. She used to have 2 favorite scents from Bath & Body Works (Vanilla and Moonlight Path) but now she is down to only one scent: Moonlight Path.


She hasn't done much for a while now, but her days are more and more dictated by routine and familiarity. She rarely leaves the house; we can't get her to come over for family dinners or gatherings anymore. Her days consist of sitting on her bed while she waits for medicine time (she sits and waits for at least an hour before each time), playing computer games and waiting at the window for my dad to come home so she can pester him to let her drive places. Once in a while she will walk to her sister's house or attempt to walk up to the Avon Lady's house. Other than that, she is a hermit.


If we thought her menu was limited before, it's nothing compared to now. She has her "Slim Fast" for breakfast every morning and two Ensures a day: a vanilla Ensure with her daytime medicine and a chocolate Ensure with her night time medicine. She eats peanut butter and jelly sandwiches everyday for lunch and alternates between sandwiches and "Slim Fast" for dinner. If we're lucky, dad might be able to convince her to eat a turkey, cheese and tomato sandwich for dinner. She no longer eats salads, tortellini, or even fruit. I don't know what will happen when she forgets what a sandwich is; it's the only solid food she eats!

She is very messy when she eats. She always ends up with jelly on her face and most times it is all over the table; sometimes the chair and floor. Again, she is unaware of the mess she makes and doesn't clean up after herself.


She seems to be sleeping through the night...although I'm not positive about that. My dad would have to speak on that one. At this point, she stays in her bed through the night and knows when it is time to sleep. She continues to nap daily, but her timing has changed slightly (she goes down much earlier now).


Mom seems to have lost the concept of time. She can still tell you the names of the months, but she doesn't seem to know what month we are in or what day of the week it is. In fact, my dad told me that on Saturday she thought it was Friday. I have tried to point out days of the week on the calendar for her and she doesn't seem to connect the dots. She still knows what time to take her medicines, but I'm not so sure she understands the meaning of a minute or hour which would explain why she sits on her bed for hours at a time staring at the clock; she is waiting for it to read a specific time as her cue of what to do but doesn't really understand how long it will take until the clock changes to that time. That's my theory anyway...

She has no concept of money. She knows she needs it, but doesn't really understand the significance or the value of costs.

So, there you have it-in a nutshell. I'm not sure if I missed anything, but you get the idea. It's a little frightening to see what is in store in the next 6 months, and the next year. Sometimes I don't realize just how bad it's gotten until I see it spelled out. It's so heartbreaking to see mom's quality of life gone. I really don't know what keeps her going, she lives for her medicine and computer games. It's a very depressing life, devoid of any pleasure. :(

Monday, January 5, 2015

Christmas 2014

This Christmas went about as well as expected. Mom had no idea what Christmas was; it is the first year that she has completely forgotten the holidays. That was a little tough...we kept trying to spark her memory with different Christmas decorations, traditions, etc. But it was to no avail. Mom lives in a small little world that revolves around medicine, eating and sleeping. She knows about little else.

My Aunt Claudia (mom's sister) planned a Christmas Eve party at her house. This used to be our family tradition-up until my grandparents died a few years back. Christmas Eve was always a lovely affair. Grandma spent days beforehand baking an array of Christmas goodies and prepared tins of treats for everyone. Dozens of presents were lined under the tree for all of the kids, grandkids and my grandparents. Nobody was forgotten. Aunt Claudia really wanted to recreate Christmas Eve and really wanted my mom to be there. We knew that mom wasn't going to understand the significance or meaning to our traditional gathering, but we really wanted to try to get her there anyway. It was nothing short of a Christmas miracle that dad was able to get mom into the car that Christmas Eve afternoon and across town to her sister's house.

When mom arrived at her sister's house, she walked through the house, searching for people and trying to make sense of who everyone was. Unfortunately, she never connected who her nieces and nephews were and it even took her awhile to figure out who my brother and his wife were (they had arrived at my Aunt's directly from Arizona). She paced the house for a good amount of time; it was hard to get her to settle down. She walked around, repeating,

"I miss my brother Jeff, I wish he was here I miss him."

We laughed a couple times when she wandered around searching for the grandkids - my sister's daughter, Raelynn, in particular. At one point, mom stuck her head outside the back door in an effort to locate Raelynn and as Raelynn responded to grandma's calls, my mom took Raelynn by the hand and brought her over to my sister, stating,

"Here you need to be with your mom, you should stay with your mom."

We were able to finally get her to settle down and sit with us; for a little while, anyway. When she was ready to go, she was ready to go! She charged out the door and plopped herself down inside dad's truck at one point. She eventually had to go potty and reluctantly came back inside the house. Before she could head back to the truck, we pulled her into a family picture and dad was able to settle her down once again (I think he bribed her by showing her her nightly medicines).

She didn't understand one bit of Christmas Eve, but we were able to get her there and spend some time together as a family. My Aunt did a beautiful job of recreating our Christmases of the past. I know that we will look back on this memory with fondness and I'm glad mom was able to be there in some small way.

Christmas Day didn't go as well as Christmas Eve. Of course mom is set in her own routine so it meant nothing to her when we all showed up Christmas morning for our traditional Christmas breakfast and gift exchange. We tried to get her to sit with us to open up some presents, but it was her time to sit on her bed and watch the clock for the next hour until it was time to potty. My sisters and I took in some presents for her to open in her bedroom. I was the smart one of the group (ha ha) and I put her presents in an open basket rather than in a gift bag, since I knew she wouldn't understand that concept. It's hard to Christmas shop for someone who just sits on her bed half the day, so we all opted out of sentimental gifts and bought her practical gifts that she would enjoy instead, which includes: make up, Ensure and Bath & Body Works. When I presented her her basket, she couldn't connect that it was a gift. She must have thought that I was showing her something that she already had. It wasn't until my sis-n-law stepped in and starting taking body lotions out of her gift bag that the light bulb suddenly went on.

"Oh, this is for me? You bought this for me too? Oh yeah, that's so good."

And with that, mom took her gifts and put them in her home.

Mom lost interest in viewing her other gifts after she put her lotions away, so when she came out of her room to take her empty "Slim Fast" cup to the kitchen sink, we redirected her to the couch in an effort to get her to open up the rest of her gifts. She didn't understand what we wanted her to do and she kept trying to get up to leave. My brother and I held her on the couch for a few minutes, with me draping my legs over her in an effort to get her to stay, he he. As we tried to explain to her that she had more gifts, mom complained about how she needed to go up to the store to get more make-up. My dad brought over his gift bag to her which contained more make-up than any one person needed. When mom inspected eyeliners (tearing it out of it's packages to make sure it was the right one) she wiggled her way out of our grasp and made a mad dash to her bathroom, where she put her gifts in their home.

All in all, I enjoyed the holiday season. I wasn't expecting much with mom so I wasn't let down as hard, if that makes sense. I still miss her all the time and it's so disheartening to watch her slip away and disengage with the family. I just can't imagine what next year will bring, although traveling anywhere (even across town) will be out of the question I'm sure.

You might also notice some other changes in mom. She has started using her blue eyeliner/eyeshadow for her eyebrows. The first time this happened (a few weeks ago) I thought it was a simple mistake. But she's been doing her make-up like this ever since. She also wears her shirts backwards most days. :(